Stroke at age 34 and Dr's can't find cause

Hello- I'm new here.
I am desperate to find some answers.
For a few years now, I have suffered with intermittent pain, fatigue, and depression. In the last two-three years or so, my symptoms have seemed to increase. Chronic headaches that last up to 5-7 days with very painful stiff neck/jaw area, awful middle back pain upon waking in the morning, and fatigue.
And that brings me to these last few months that have been just awful.
-
Second week of April 2013 I had some type if GI problem with awful upper stomach pain and watery dia. for several days. Ended up in ER because my stool eventually looked like pitch black thick water. ER ran a couple tests but found no cause.
-
Third week April 2013 (the very next week) I started feeling extreme flu- like aching on a monday night. had to go to bed.. the next day i started feeling ill around 2pm with a headache. By 7pm had raging fever and severe neck pain and stiffness. Like "the worst headache of your life" type headache. Woke up the next morning (Wed), fever gone. By that evening it was back. Next morning gone. By Thursday evening my fever spiked and there was this horrible aching pain from the top of my head down my neck and back. Wanted to die. Fever came and went for several days this way. Six days in all.
-
Last week of April 2013
Woke up with what felt like I slept wrong on my neck. I literally could not move my neck/head. I complained for several days about this awful pain in my neck. Finally my hubby took me (after about a week of complaining) to get an adjustment/ deep massage. MISTAKE. It did not help at all. My pain was awful. My skin on my neck even hurt. I tried heating pads but it felt like it was a thousand degrees on my skin. I took loads of Advil-
No relief.
-
May 9,2013
felt ok most of the day. Still had that neck pain but learned to ignore it after a couple weeks. :( 7:30 pm on the dot.... Sudden severe vertigo. Like the worst spinning/sinking sensation you could ever imagine. Hubby had to help me walk because I was walking to the side and severely uncoordinated. Like the worst drunk you've ever seen times a thousand. Within 10 minutes I was wretching, gagging, vomiting. Spinning. Gagging. Vomiting. Hubby rushed me to the ER. several tests and a hospital transfer later, I was diagnosed with a cerebellar STROKE.

But here's the problem. I have been evaluated at two of the most prestigious hospitals in my area (Philly) and not one doctor can figure out why a "healthy" "young" woman would have a stroke.
I'm 127 lbs
I have excellent blood pressure, excellent cholesterol level, don't smoke, don't take the pill, don't drink, don't have diabetes.

And here's the kicker- in my MRI report ( the one that discovered the stroke) they said there was no blood clot present. There's always a clot present when there's a stroke. UNLESS A CLOT DIDN'T CAUSE THE STROKE!!
In my own research, I have read of cases of lyme being the cause of strokes.
I am hoping that my story might sound familiar to someone else out there so I can begin my journey of finding answers and getting well.

I apologize that this is so long. And if you're still reading,
Thank you so much.

omg Nicole I am so sorry. My heart goes out to you. Here's the thing with lyme. The medical community, no matter what hospital you go to, does not know lyme. The tests are just not there for it. My husband was in the hospital suffering horribly and every doctor looked me in the eye and told me nothing wrong with him. I knew in my heart he had lyme as I do. The only "thing" they could find in the hospital was severe anemia, however their lab tests actually missed the parasite Babesia which was eating his red blood cells. make a long story short, don't give up. You REALLY have to fight for a lyme diagnosis and treatment. I did (and almost got thrown out of the hospital lol) and he is doing great now two years later and still in treatment.

Your symptoms really sound like lyme, especially the stiff neck. It was my first symptom. The most important thing to do at this point is to research as much as you can so you are knowledgeable about lyme and coinfections. Then, find an LLMD in your area. In the meantime, it may benefit you to ask your primary doctor if he would agree to send your blood to Igenex which is the top lyme lab in the country.

Somethings you can do in the meantime is to avoid sugar, which feeds the bacteria, take magnesium - lyme strips us of this crucial mineral which leads to alot of the muscle pain, drink lots of lemon water which will help to detox your body.

Also, did you get a copy of all of your test and lab results. This could really help lead to a diagnosis if they show inflammation, high platelets, etc. Has anyone run a lab test at all on you?

Hang in there, you are young and healthy and able to fight this stupid disease. It requires some work and patience but it is really possible to get feeling great again.

Nicole, if you change your profile to include your email address, I will email the name of my LLMD. I do not know if she is taking new patients or what the wait time is. I do absolutely love her though so I hope so.

You say that labs and tests are "pretty much" normal but do not go with what the doctors/hospital are telling you. GET A COPY. The reason I say this is when I was hospitalized twice in 2006 and then went to primary doctor, I never ask for copies of anything and lo and behold there were clear indications of lyme on the tests results.

Have they put you on any meds at all?

Lyme definitely thickens the blood.

sent you an email Nicole. So sorry to hear what you are going through.

Hi Nicole,

Welcome! I am so sorry you are going through all this.

I agree with what the other members have said. Please email me if you need help finding a doctor.

We are here for you!

The guy who does our landscaping had a stroke a couple of monthes ago. The Dr's couldn't find any conventional reason for the stroke so they just started testing for everything, he tested positive for lyme and rocky mountain spotted fever. The Dr's, in conservative Georgia now attribute his stroke to lyme. He just learned all this in the past month and is now on antibiotics. In the course of his landscaping work he's been bit numerous times by ticks but never noticed a bullseye rash. Based on his experience, I certainly wouldn't rule out lyme in your case.

Thank you all so much for your replies and support.
I have been doing a ton of research and reading. Several months back, I took my daughter for bio meridian testing. She was suffering from awful skin rashes. Anyway the person I took her to told me that she was testing positive for lyme/ babesia according to this bio meridian test. And she said it was from in-utero, which means she got it from me. I kind of shrugged it off at the time. But the more I read and research about that awful disease, the more I feel like I'm reading about myself.
I think I will start a new post and ask about meridian stress assessments and people's experience with being tested that way. I don't know whether its reliable. But it sure sounds like it wasn't far off from being accurate.
Thanks again:)

Nicole,

Welcome. I just wanted to chime in to say "welcome" - even though I'm sorry for all that has led and contributed to your being here.  I echo what everyone else has said - do your research, trust your gut, remain open to all possibilities and advocate for yourself to get what you need.  There is a WEALTH of information here regarding Lyme, how complex it is, including the challenges with testing and the medical profession's too-often-disregard for what is indeed both knows and suspected about Lyme and it's repercussions.    We are all here for you and with you. Take good care and reach out as it's helpful to you. Kathleen

I had to join and reply to Nicole's post. Your outline is very close to my EXACT experience 6 months ago.
In summary;
- active & healthy
- neck pain
- midnight heart palpitations and occasional numbing in the fingers
- cerebellum stroke with extreme dizziness hit me on a Sunday afternoon
- thankfully doctors here in the Boston area did acknowledge the stroke but question the cause.
- diagnosed with Lyme's by a naturopath doctor (after primary care physician and ER downplayed any lymes as the possible culprit)

Fortunately I'm recovering well from the stroke and working with a naturopathic doctor to tackle lymes (antibiotics, magnesium, vit C).
But my goodness, I'm finding more stories like mine of healthy people having a stroke.
Seems the health community is slowly realizing the epidemic it is.

Hi nicole, im sorry for all the troubles youve experienced. I pray you find your way to a llmd who can help you understand this serious disease if it is fact what you have. And I prayGod gives you the strength to handle the 4 children. Im hoping antibiotics can help you soon. Ive had many of the symptoms youve experienced due to neuro lyme. Im 8 months into tx and doing better. It def takes 5-6 months before you feel somewhat normal. Hugs and I hope you find peace soon.

www.nytimes.com/1990/08/17/us/lyme-disease-is-now-linked-to-stroke-in-20-year-old-gi.html

My fiance is (was) a healthy strong 23 yr old man, we were living in the Ocala Nat'l Forest it was not uncommon for him to get up to 20-30 nymph deer ticks on. him a day after working in the yard or hunting, etc...

Fastforward: He suffered a massive stroke on February 19th he was treated for meningeoncephalitis as a "precaution". His opening pressure during lumbar puncture was almost 50!! His proteins were highly elevated at 117mg.

He was not expected to live through the first 24-48hrs but he did. His Mother made what I believe was the mistake of telling them that he had ALL (Leukemia) as a child, well that was all it took and they got tunnel vision. They quit trying to look for the cause of the stroke (and even later said that the ALL cells caused the stroke) which was insulting in and of itself to think that these rogue cells could have caused the bleed.

They wouldn't listen to my pleas and started straight away with Chemo, they put a part in his head and a Picc line in his arm and got to poisoning him.

He tested Neg for Lyme,--but.....

A couple weeks into the Chemo he stated having fevers, they knew an infection was present but did little to find the cause. I got to the point where I all but threatened them and we finally go tan Infectious Disease Dr. to see him at the hospital, I had false hope that he would help us. To my disappointment he did a couple tests (because we worked on a farm my initial thought was that he could have been infected with a zoonotic disease that had CNS involvement)

They had me so spun out that Lyme and co-infections were the last things on my mind.

The Infectious Disease Dr. put him on a two week cycle of Doxycycline to "clear up" whatever it was and told us that no further tests would be done.

I had been talking to anyone in the hospital I could nail down for a few minutes and the other day upon our 3rd admission in 40 days I started sending e-mails. (we are being treated at a teaching hospital and the Dr's are actually employed by the University and so I just started e-mailing.

Now I don't know but they were throwing up their hands and planning to give him Chemo yesterday but the night before out of nowhere in spite of the ID Dr saying he wasn't going to do any further testing, he called in a test from home at 12 at night for Bartonella. We don't have the results but why all the sudden,-- then they decided not to do the Chemo that day and sent us home to wait for his normal Chemo clinic day this Friday??

Why the sudden change of tune what do all these monsters know that we don't know, I feel that all things considered they are putting his life at risk.

Please someone point us in the right direction to get some help and resolve.

Thank you.

Namaste.

Thank you, as do I.